I have had breast cancer and survived it, I think I suffered more mental anguish than physical , it was caught early and I had no spread, so I just have a very large scar and some scar tissue , so I know I was extremely lucky, it was found when I had a check up on the mobile screening unit. I have had 3 lumps removed from my breast prior to the real deal, and my mother also died of breast cancer.
My husband (Tomdog) has now been diagnosed with Liver Cancer and unless he gets funding for a new drug, his life will be cut short, we have lost the appeal for funding , we have been in the newspapers, radio and television, trying to highlight the case of this ridiculous system of funding which causes postcode lottery. I believe it is morally wrong to withhold a drug that you may benefit from on the grounds of cost, especially if you offer to help with the costs yourself (by selling assets), and they tell you if you do that you are unable to get any further treatment on the NHS. WHY? surely if you can put any money into helping the NHS that has to be a good thing, but not them, it is all or nothing, in a nutshell they will not provide treatment and they will not allow you to buy it either without taking away care that you are already getting. CRAZY.
Having had cancer and now being the partner of someone with cancer, for me it was easier to be the person with the cancer. I find it very frustrating not being able to do more than I do. Feels like I rage at the moon, try to engage people on what is happening to cancer sufferers but it feels like I am talking to empty vessels.
FormerMember
Hi Penny
I have not been told the name of this drug yet,my consultant is contacting my GP who I have an appointment with on Wednesday and I will find out more info then, and I will let you know do you know what the name of tomdog,s drug is that he was refused and what area he lives in.
I found the petition and I ham going to do it now as I have had my grandsons all day,as they take over the computor.
Yes, get all the info you can. It may also be worth asking him if he belongs to this Doctors' Forum who are trying to persuade the government to accept that people can "top-up" by paying for a drug themselves without getting landed with the bill for their enture NHS treatment. Wishing you the best of luck for Wednesday xxxx Penny
I am sorry you find yourself inthe same situation as Tomdog, the drug he has been refused is Sorafenib (Nexavar). There has been a large amount of coverage on this subject in the last 2 editions of The Sunday Times, people are being let down by the NHS , that they have paid into all their working lives, absolute disgrace, to then tell you that if you try and fund the drug yourself you will be refused/have to a pay for all further NHS treatment. In yesterdays Sunday Times it told of a group of oncologists at University Hospital Birmingham, who have found a way round this problem, by issuing private prescriptions for the drug you require and is administered by private nurse at home, circumventing the NHs and allowing you to keep your NHS treatment, maybe you could get a referral to that hospital, worth talking to your oncologist, you may find the article on The Sunday Times online now. As Penny mentioned before, Tomdog has not received ANY treatment at all for his condition, and we have to appeal again, which we expect is a waste of time, so our only option is to go legal, Judicial Review. It must be against Human Rights to withhold treatment that is available and can extend your life expectancy, and not to give you any help at all. We will know more about this soon, will keep everyone updated.
Thank you for this information,and I will look at the artical on The Sunday Times.I have an appointment on Wednesday with Doctors and I will know then the Drug I can not have I will let you know if it,s the same as Tomdog. I agree with you that its a total disgrace that we are not allowed these drugs to keep us alive I am a young man of 57 like Tomdog working all my life looking forward to enjoying retirement.Talking about Human Rights look at all these drug takers who end up in prison,and get a payment from the goverment because they can not get there drugs in prison as it,s against ther Human Rights,I think our goverment have got it all wrong.at the end of the day they chose to take drugs.We had no choice, Cancer chose us.Hope Tomdog keeps well our thoughts are with him.
Hope you and Tomdog are keeping well,I have been to the Doctors today and the name of the drug is called BEVACIZUMAD (AVASTIN),have you heard of this one,as my Doctor as not,but my Doctor does not hold up much hope of getting it,but it is available in Scotland and I live in Carlisle only 10 miles of the border.I am going to resurch on tne net for information.
